When the Diagnosis Pretty Much Stinks....

I haven't felt "normal" in at least 6 years. I know "normal" is a relative term but seriously, this can't be the way everyone feels.  I've struggled with muscle stiffness for hours each morning, serious fatigue for most of the day, whole-body muscle soreness, neck pain and stiffness, and just feeling bad in general. I've been to so many doctors. Every type of doctor that you could think of. No one has ever been able to figure out what causes me to feel so bad. I've been misdiagnosed and prescribed all sorts of medicines. I've been given supplements and exercises to do. I've gone to integrative specialists and done a hundred different diets and tried at least 4 of those all natural programs that guarantee to help all that ails you. I honestly feel like I've done everything I could to figure out and/or fix what was wrong with me. Nothing works.

About three months ago all of my symptoms worsened, I started having severe pain on the left side of my body. It started in my foot which I brushed off as plantar facisitis. Then my first big knuckle on my left hand started to swell and become very painful (it remains that way, even now). Then my entire leg started to hurt, so badly sometimes that I could hardly walk. Then I began to have a lot of pain in my chest and ribcage, especially when I took a deep breath. I remember a few of those days being absolutely terrible. One day I was taking the boys to camp and I honestly wasn't sure I could make it from the church door to the car door. That was the day I knew I had to do something to figure this out.

I went to an urgent care and saw --who I have now decided is-- the best urgent care doctor in the world. He was thorough and compassionate and believed that something much more complicated was going on. He did several blood tests that proved that I needed to see a Rheumatologist right away. The Rheumatologists in my area had a 4 month waiting period for the next appointment. After a lot of prayer, I decided to ask my Endocronlogist at Duke if she would refer me to a Rheumatologist at Duke. She said she would but she felt sure the wait would be just as long, if not longer. The very next day someone from Duke Rheumatology called me to set up an appointment. She said a doctor was very interested in Rheumatology patients that also have Endocrinology issues and she would like to work me in right away. I was seen that Friday. If that's not God at work, I don't know what is! 

At that appointment, my doctor did 42 tests to find out what was going on with me. She gave me an idea of what she suspected I would be diagnosed with but told me it would be a couple of weeks until all the tests came back and she would get in touch with me once she had a diagnosis.

After 2 weeks and 3 days, she called today with my diagnosis. This diagnosis is different than the idea she had given me, therefore it was not at all what I was expecting to hear. I had spent two weeks getting used to the other idea so this diagnosis shook me a little. She told me that I have Ankylosing Spondylitis. What? 
Never heard of it?? 
Yea, me either! 

So, you know as soon as I heard my diagnosis I started googling. I know, I know, I shouldn't do that but you would too! These are the lovely pictures I came across. 

Ummm, can we say panic attack?

Thank goodness the Peace that surpasses all understanding started to take over!

I made myself stop looking at pictures and start reading the facts. And this is the best definition I have found...well, this is actually my paraphrase of several definitions put together....in a way that is easily understood.

Ankylosing Spondylitis is a rare auto-immune disease. Most typically the spine is the focal point of the disease but it also affects the ribcage, hips, feet, hands, and other peripheral joints. As with all auto-immune disorders, the immune system is attacking the healthy parts of the body. The difference with AS is that the body will try to heal itself by growing new bone in the spine and other joints. This can lead to spinal fusion. Chronic fatigue, extreme muscle stiffness, pain and difficulty when breathing, muscle soreness, flare-ups on one side of the body, etc, also play a major role in AS. 

I have spent a few hours today picturing myself as the Humpback of Notre Dame, being mad because this isn't a disease that anyone understands or even knows about, and fearing what might happen in the future for me and family. I've been wondering, "will I become deformed? Will I lose mobility in my spine, hips, hands, feet, etc? Will I lose my eyesight? Will my breathing become impaired because my ribs calcify? Will there ever be relief from this pain I'm dealing with?

Ankylosing Spondylitis is not life-threatening but let's be honest,  it definitely threatens life as I know it, or as I want it.

And that is exactly where God speaks to my heart. Over the past 2 weeks I have been praying and deciding to believe that God knows exactly what He is doing, no matter what. So I still believe that is true,  even with this stinky diagnosis.

A few weeks ago at Bible Study we focused on Mary, the mother of Jesus. When the Angel of the Lord told her that she would that she would carry and give birth to the Son of God, she simply said, "May it be it done to me according to your word." She was a quiet teenage girl. She could possibly have been stoned by her fiance for being pregnant before marriage. She could have been disowned by her family. She would never have a "normal" life. She must have had a thousand concerns running through her mind. Regardless of the fear and worry and unknowns and questions, she just said, "may it be." What probably seemed like a curse would turn into the greatest blessing ever, not only for her but for the entire world. 

So, that's my prayer too. May it be. 
If this is the road I must travel down, may it be. 

I do have to say, I am incredibly grateful for a diagnosis. After so many years of feeling like no one believed me and searching for answers without any, finally knowing what I'm dealing with is truly a blessing. I will go next Monday to learn about treatment options and decide on a medical plan. I am also thankful that my God has been preparing my heart for this. He has been reminding me that He's in control, He's my source of strength, and He has purpose for everything I endure. 

God built me for this Battle. He knew before I was born what I difficulties I would face and with His help, I have all I need to be victorious. 
So, may it be.